[William Kim Burnett]

I started on Cellcept/Mycophenolate almost 3- years ago after 2- years of Ofev. I would say that my Rheumatologist recommended this medication because of my CK”s going through the roof. I might also add that I already have Ryanoids which is an Immune disease which also complicates things. While I have enjoyed less side effect and remained stable, I will admit to some side effects still. folks we all know we are going to have some bad days along the way, but I have done really well. I use Oxygen at night with my C-Pap and while flying and portable sometimes while in the yard.

I did have Covid twice but did okay with that late in the Covid era, but right before Christmas last year I caught R.S.V. and that took me forever to get over and got me out of my therapy of exercise and walking. I might add that I am 66 years old and was diagnosed 3 months before I retired at 62.

This I am sure of was from my low immune system, came back had good results with my breathing test and walk test. My Ck’S are still a bit high but are continuing to come down. Also, my Magnesium is a bit low but not bad. Getting ready for a Liver Scan and a C.T. scan on my lungs, which I have not had in a least a year and a half because I have stayed pretty stable.

In reference to lowering the Immune my doctor has put me on Bactrim DS Three times a week to help protect me from getting a bacterial infection in my lungs. as you probably know there are very few anti-biotics that we can take. so far this has worked. Along with that I take Mycophenolate 1500 Mgs Twice a day, 5Mg of Prednisone three days a week so I can keep up with my grandkids on the weekends. I know you may think this is a bit unusual, but my doctors all think my condition is as well. All our journeys are different and after years of living with this opportunity we all must decide our paths of treatment. My conclusion is trying Cellcept worked for me pretty well

Continue to do as your doctors instruct you/exercise/relieve stress by Yoga or stretching outside if possible/Pray and may God bless you all.

George, I hope this helps in some way

William (Kimbo) Burnett

[William Kim Burnett]

Hi Charlene,

I don’t like the gloomy weather either, but I try to offset the effects by going to the Gym at least twice a week. It not only helps me get the walking in I need but also gives me the interaction with other people. We sometimes get into social isolation if we don’t have a schedule or a plan which can be difficult on those bad days, and you know the ones I refer too. Anyway at least get out and move going shopping always helps me. Staying at home is not the answer for me although there are days when we just need Sunshine in our lives. 😎

God bless,

William Burnett

[William Kim Burnett]

Hi Maizeblue,

We had a cockatiel for 14 years not sure what caused my IPF. No indoor pets after that, sure loved that bird he has been gone for a long time. Just mentioned as a reverence. Best of luck God Bless.

[William Kim Burnett]

Hi Carol,

My name is William and I also have Raynolds and IPF. I am not on oxygen except when working in the yard or exertion. I also wear CPAP at night, I was on Ofev for about 2 years when my doctors suggested that I try Cell Cept also for the Immune system problem. I decided to come off the Ofev although my Lung surgeon did not think it was best. I did it for Quality over Quantity since my disease was holding steady, to be determined. I continue the Cell Cept and watch my diet and get a lot of walking in. I am blessed with an indoor track that is level, you know the challenges with slopes and hills. I have had to make a lot of life changes such as sports I used to do but still camp, travel with portable oxygen and exercise every day. I and my wife spend a lot of time together and make as much out of every day. I also use mullein extract in my coffee with about 6 drops along with a sprinkle of turmeric and honey no sugar. I would say for me that sugar, chocolate, and dairy would be my biggest issues in this battle. also, any alcohol is bad. I try to improve my spiritual well-being each day with quite time and have been blessed by the results. I am in my 5th year. Good luck with your journey and I hope something I wrote will be of help.

God Bless

William Burnett

[William Kim Burnett]

Same as Bill, Told I had IPF 3 years ago been on Ofev for 2.5 years started at 150 but couldn’t tolerate and was switched to 100. Sought out second opinion with the help of my Lung Doctor to a transplant hospital, ran more test and they told me they weren’t sure it was IPF but might be autoimmune disease. I also showed ground glass, but have not shown progression in the lung scarring.

Went off Ofev for the time being and have started on another drug called Cell Cept to fight autoimmune disease. It is frustrating but we can not give up hope.

[William Kim Burnett]

I was on OFEV for two years but have now switched to Cell Cept because of high liver enzymes and Auto-Immune disease. The Cell -Cept will be used if my condition gets to transplant status for P.F. anyway. I do have Gerd spells usually after meals. (Diet is critical) but unusually not after bedtime. My status is good right now and am exercising regularly. Outside activities are tough and I wear a mask if any kind of yardwork (not recommended). I just had a E-Probe done last week and will be seeing my Gastro next week. Thanks for the heads up, my mom and sister both had a Hiatus Hernia so I suspect the same with me, I have also heard the condition can be hidden (no Proof) I might add that stopping the Ofev is risky but until my lungs get worse, I am happy to do without it in order to protect my liver as much as possible and to avoid side effects. I recommend that you get all labs done as the doctor’s order. May God bless you and heal you.

William Kim Burnett

[William Kim Burnett]

First let me say everyone has different situations going on. I did ask my doctor about cutting down doses and he told me there weren’t enough studies to show that as an alternative. Needless to say, the Ofev or something else shot my liver enzymes up and they put me on Cell Cept instead. I will also note that the Covid Booster triggered Myopathy in my body and just about crippled me last November so the inflammation could have come from that. I am much better now but no longer take Ofev my body couldn’t tolerate it and the side effects. My enzymes have constantly been dropping and I am walking and stretching out daily and my breathing test are staying steady. Exercise is paramount. I went yesterday and took the Evusheld vaccine because of the reaction to my immune system to the booster. I think Qfev is a great drug I took it for 2 years 100mgs twice a day and it held me steady. I had to adapt to the Cell Cept which is used in all transplant patients in order to alleviate my immune system attacking itself. I still have lung disease, but the scaring is from something else other than P.F.  I will return to Ofev if and when my condition worsens. I give all praise and glory to God in this journey. And pray his blessings on all of you. I would seriously consider alternatives only with my doctors’ approval.